The worst part of being a caregiver for a person living with dementia is that you seldom get much real help from family and close friends.
By Donna StClair
Alzheimer's Reading Room
Time and again I have heard the same refrain:
the worst part of being a caregiver is that you seldom get much real help from family and close friends who should be able to pony up and provide just a smidgen of assistance.I’ve got something worse than worst.
Instead of help and assistance, I get criticism.
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Have you ever heard these words?
- Why aren’t you doing this?
- How come you do that?
- You should take anti-depressants.
- Put him into day care somewhere--it’ll be better for him.
- He doesn’t seem so bad--why are you thinking of putting him anywhere.
- Why are you spending so much money?
- How come you don’t take time for yourself?
unless you have walked in the boots, you can’t comprehend the journey.
Consider how everyone is before they become parents.
Having that first child is the greatest slice of humble pie that you will ever eat in your life. Almost everything you ever declare that your child will never do--he does. Almost everything you swear that you, as a parent, will never do--you do.
Little by little, you swallow every single prognostication that you ever uttered, until finally you wind up saying things like “As long as you live under my roof….”
Most people have experienced this humbling event.
So, why do these same people feel so well qualified to step forward and offer advice and criticism about a path that they have never walked--namely, that of an Alzheimer’s caregiver?
Did they learn nothing from the hearty slice of humble pie that they ate as new parents? Do they need a second serving, perhaps?
The recipe for being a loving and supportive family member or friend to an Alzheimer’s caregiver is such a simple one:
- Listen when I talk. Don’t advise or critique. Just listen.
- Ask, specifically, what you can do to help--not what I ought to do to help myself, but what YOU can do to help me. If I can’t think of anything, offer a suggestion or two based on what you have heard me say.
- Deliver what you offer. If you have indicated your intention to spend quality time with your Alzheimer’s relative or friend, or to call regularly, or send cards and letters--do it, without being reminded. This clock is ticking ….
I am all ears when these folks begin to talk. They know whereof they speak. I savor every word they have written. They are my oracles.
But for the rest of the world--if you can’t do something to help, at least refrain from hurting.
In other words ... help out ... or shut up.
Donna StClair is an Alzheimer's caregiver.
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